Project Background

ALS or Amyotrophic Lateral Sclerosis is often referred to as Lou Gehrig’s disease, after the NY Yankees baseball player. ALS is a disease that affects nerve cells in the brain and spinal cord over time. Once these motor neurons die, the brain loses control of muscle movement. ALS is not curable.

Why Conduct ALS Surveillance?

Public health surveillance is needed to accurately determine the incidence and prevalence of ALS. In order to assess the burden of ALS, we need accurate estimates of the number of people affected by ALS. This information will allow the public health community to detect changes in disease prevalence, describe who develops the disease, investigate the health care needs of the population, and detect changes in health care practice.

Legislative Mandate

In 2008, Public Law No. 110-373 established a national registry for ALS. ATSDR, a federal public health agency of the U.S. Department of Health and Human Services, was given the responsibility to develop this registry.

How Did New Jersey Become Involved in This Effort?

To evaluate the completeness of the National ALS Registry and to obtain reliable information on the incidence and prevalence of ALS in a defined geographic area, ATSDR awarded McKing Consulting Corporation (McKing) a contract to oversee the development and implementation of state-based and metropolitan-area ALS Surveillance Projects. McKing solicited proposals from nine states in November 2009. McKing selected Florida, New Jersey, and Texas based on their experience conducting similar projects, population demographics, and proposed costs for the project. Additionally, eight metropolitan area sites, Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia and San Francisco, collected surveillance data in defined geographic areas.

Data Security

The New Jersey Department of Health (NJDOH) collects information on a variety of health conditions, including deaths, births, injuries, illnesses, impairments, hazardous exposures, and utilization of health care services and facilities. NJDOH is responsible for establishing and maintaining appropriate mechanisms to acquire, produce, and safeguard the confidentiality of the data.